“We are family…”

I sometimes find myself quietly chuckling each time I start to write a fresh blog post, as, for some reason when I’m looking for a way into the first sentence, I easily hear the voice of John-Boy from my favourite childhood TV show, The Waltons. His gentle tone – in reality it was the show’s creator Earl Hamner – providing the opening narration to each episode depicting his memoirs of early family life, seems to have left an impression on me, giving me a sense of tone, pace and pitch as I start each time to write and describe life, not on Walton’s mountain, but in the familiar yet still strange land we as a family inhabit.

But this last ten days it’s been the Waltons come to life around here as my parents, Trish and Nick, my sisters Anna and Julia, and brother Hamish, then later joined by my brother-in-law Simon, have all arrived in from either Christchurch NZ, Melbourne or Vancouver. And that was preceded two weeks before by my other brother-in-law Kelvin coming for a few days from Melbourne to spend some time with me. At one point during last week, if you were here, you would have heard, “Good night, John-Boy”, “Good night, Mary-Ellen”…well, if you know the show, you’ll know the patter. 

We had a good time together, with Ma and Pa now staying on for a few weeks. But we all knew why we’d come together, even though we’d done it before shortly after my diagnosis two years ago when we thought I only had a very short time to go, not realising how amazing an effect the new immunotherapy drugs would have in that first year, to say nothing of the chorus of prayer.   

This time however, we’ve all sensed that there’s been this fresh line in the sand drawn with not only my brain tumours, but also the increasing appearance of more and more small melanoma tumours just under my skin all over the front of my torso and the fresh increase of the tumour on my neck, all indicators of drug’s lessening effect. That, combined with a conversation Catherine had with a friend very experienced in palliative care, was sobering but really helpful. She indicated that while I seem relatively active and well, she has witnessed some like me suddenly decline rapidly within even a week.

So, rather than dancing round the ‘elephant in the room’ while we were all here in Exeter together, we gathered intentionally on Wednesday morning then again after our meal on Saturday evening to talk about what is going on for each of us as we confront and work through the strong possibility – as painful for us all as that is, including me for them – of my death in the next few months. It was a truly precious time of sharing and being together, enabling me also to say and share something of what I needed them all to know in the clearest terms – that if they were worried for me, they needn’t be as I was feeling so utterly peaceful for myself in the middle of it all, knowing that I have a Saviour who’s taken care of death, beaten it and that I was so aware of His hand on me, and so therefore on all of us, as we walk on. As well, my passion and love for all that the Bible describes of Heaven and my excitement in anticipating it, were as pronounced as ever.

In Looe, Cornwall

So, these times of sharing and being together, along with some great days out – to Looe, to Bath and over to Moorlands College and Christchurch, Dorset – allowed Catherine and Lydia to have a good half term break, and allowed us all to create some precious memories together.

Catherine and I were also blessed to attend a weekend away near Daventry in mid-October with the amazing Care for the Family’s Bereaved Parents Support network. We approached the weekend not sure how it would feel as, to some extent, with the recent news on my cancer spread we realised that we’d subconsciously ‘parked’ our ongoing grief for Ben to one side as we were dealing with our latest news. But going along, helped us reconnect and, I suppose, reintegrate those things as we spent some time with other parents. Truth to tell, it was a weekend with painful depths to confront, but gave much at which to smile, and be both still and thankful.

My hair has been gone for over three weeks. I asked friends on Facebook to decide who I now most resembled – Spike Milligan’s ‘Bald Twit Lion”, Kojak, Sir Patrick Stewart or Walter White? The vote came back for Walter White (although, for those who know the series he’s from, I’m stating clearly I’m cooking nothing stronger than sushi in my kitchen)

I’ve been so encouraged by a number of old friends who’ve travelled both from near and far away to see us in recent weeks. They’ve encouraged us and reminded us that we’ve been placed in an amazing family called the body of Christ. Each visit and times spent also with local friends have been heartening and uplifting. Two conversations rate particular mention, both with longstanding friends – Chris Edmondson and Jonny Elvin. Within both, we spoke about God’s grace. At times, to my natural mind, it seems so far fetched – so amazing – that Christ has done all we need as we face life and eternity. My head sometimes says, how so?  No good works to earn it? No ‘something else’ to top it up to be forgiven, to be in a right relationship with God ? No heavenly brownie points to gain to be safe and secure with God through life and beyond death? No, no, and no. It’s ‘simply’ repent and believe in Christ who died for you. As I spoke with both about it, I simply said, “Tell me it’s really true”. “It’s true”, both said. Amazing grace. It’s the one thing that truly breaks the old rule that says, “if somethings sounds too good to be true, it probably is”.  Not this one.

We’ve also had so much love and care from our local community group at Grace Church with meals, accommodation, lifts and other practical help, which has been immense. One night, the guys from my blokes group, seeing it was a full moon, decided to head up onto Dartmoor, to Hound Tor, where we stayed sheltering next to the Tor, in the dark for an hour or two, having a laugh, sharing communion in the moonlight, praying for each other, worshipping and taking in the vast landscape of Devon in front of us, lit by the moon above and the lights of the villages and towns in the distance.

But among all these activities, Simeon, still on crutches, sat and passed his car driving test. Crazy determination.

Well, as I face my next dose of pembrolizumab (aka Keytruda) this Friday, I’m conscious that the time may be closer when the drug may be withdrawn if it seems it’s still having no effect. In the meantime, I’m starting to feel the effects of some surface tumours, becoming quite sensitive and tender. I’m also finding I’m needing to marshal my speech occasionally  –  the free flow of words isn’t what it was. The decision about the drug won’t be until we get the result of my next scan due in a couple of weeks. Because of that possibility, I’ve felt that it’s been worth asking whether I should be applying to join in any available drug trials for new release medications. That’ll be a conversation taking place over the next week or so.

In the meantime, in my ongoing daily Bible reading, I found some fresh encouragement from the Old Testament book of Habakkuk. I once heard a seasoned older preacher saying how important it was to make sure you knew at least something of the main message of each book in the Bible, even some of the more obscure ones, like Habakkuk. He said, “Wouldn’t it be awkward, if you were in heaven, and Habakkuk came up to you and asked, “So, how did you enjoy my book?” Wouldn’t it then be just so awkward having to spend eternity trying to avoid him?!

It’s a short book written in the late 7th century BC mainly containing a conversation between God and the prophet Habakkuk regarding Habakkuk’s real disturbance about his nation, about all the unchecked violence, injustices and empty religion he was seeing – things that were happening which seemed so appalling. The conversation develops over the three chapters. And God lays out before Habakkuk what he’s planning on doing. Nothing ever catches Him out or is beyond his ability to sort.

But as this short, three chapter book comes to an end, Habakkuk simply says this –

Though the fig-tree does not bud and there are no grapes on the vines, though the olive crop fails and the fields produce no food, though there are no sheep in the sheepfold and no cattle in the stalls, yet I will rejoice in the Lord, I will be joyful in God my Saviour. The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights. (Habakkuk 3)

It’s really encouraged me, again. The preceding part of book is pretty stark – life will have hassle. Problems come, and problems can remain. The fig tree might not bud, money’s tight, health packs up, friends might let you or I down, dreams we’ve had may be lying in pieces at our feet – or at least they’ve never delivered what we hoped they would. The list can go on.

The world around us looks for ways of taking the problems away, but Father God so often allows that those problems stay and uses them to develop character in us and discover more gold in our relationship with Him. In fact, Jesus says,

‘I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.’ (John 16:33).

That’s a promise we can bank on because He, the Sovereign God, is so much bigger than anything we face. If we can hold onto Christ despite what is happening, Habakkuk describes that we can even be joyful in the face of sufferings and problems…the one who can know an inner strength from God despite what’s happening. We can do it because we know that with Christ in us…the best is yet to come.   

“Drop Thy Still Dews of Quietness….”

There’s a curious blend of increasing inertia and yet deepening quietness that’s coalescing inside me at the moment. On the one hand, I’m so conscious of numbers of important and mainly family related things that I’m needing to do, one by one. It’s partly and largely spurred on by the five consecutive days of radiotherapy starting next Monday, 26th September. I’m aware that my cognitive functions, including concentration and memory, will likely be effected by it. There may also be some collateral damage caused to the wider area as the beam can’t be focussed too narrowly…a point for prayer. 

Consequently, a number of things lay at the front of my mind to sort.

But at the same time, aware that the cancer, particularly the tumours in my brain, seem to be progressing, I’m finding myself just more than ever, pressing into God – resting back into Christ – more and more “drawing deeper from the wells of salvation” and the resources He’s wonderfully provided for all who come to Him, remembering Jesus words, so familiar to so many…

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.

Last week, though, had some tough reckonings to deal with. On Wednesday, Simeon had a reasonably serious motorbike accident and broke his pelvis, as well as pretty much writing off his bike. He’s now out of hospital and back at his flat with good friends tending to him, but he’ll be incapacitated for 6-8 weeks. His beloved, reasonably new, bike was only insured third party, so he’s pretty devastated.

Jeremy having the head restraint mould taken

Then, the following day, I was measured up for the head mask/restraint that I’ll wear during the radiotherapy next week. While there, I managed to spend some time with Andy Goodman, my oncologist. It was one of those sessions where I needed to ask him some straight questions, and Andy, so helpfully and carefully sat with me. My main question was time. Now that the tumours have reached my brain, what, from his experience is the likely time left? His very gentle responses…with no radiotherapy, maybe three months. With radiotherapy hoping for palliative effects, six months. If, though, the radiotherapy has the effect of bump starting the brain into taking the pembrolizumab (aka keytruda) on board, who knows. But I got Andy to reconfirm that he’s seeing that the drug is showing signs of becoming less effective around my body, so it’s therefore unlikely to have any effects in my head.

I guess, from the previous week’s news, I knew it already, but the sobering nature of the specifics of the timings, hit me again. It was a somewhat surreal experience then to walk from the Oncology Department into the Trauma & Orthopaedic Ward to see Simeon – to walk into his situation with my information. Strangely though, his has proved to be a useful distraction to allow mine to slowly sink in.

That night, as Catherine arrived home from the sanctuary that school is for her, we sat and talked it all through. The tears for both of us flowed. And then, later in the evening, I rang my sweet sister Anna in New Zealand and, again, with emotions fully exposed, shared it with her. I needed her to go round to Ma and Pa’s to tell them face to face. Phone, FaceTime or Skype wouldn’t do. That was for the next day.

And so here…here I am. Here we are. I’m feeling – more or less – as well as ever. In a bizarre new twist, I’m going off to the local gym five days a week for an hour. It feels great for this one who, to quote my late best man, Nigel Clarke, in his speech at my wedding,

“At school, Jeremy had the most amazing ability to avoid any form of physical exertion whatsoever”

But all the while, I’m conscious – and more than ever – that I’m living with a reality that is drawing in. But in that reality there are possibilities that I don’t dismiss or ignore. Pressing into Christ, on those many promises He’s made to those who love and trust Him, provides Hope (capitalised deliberately) of the fullest kind. I’ve been stirred constantly by the Old Testament story of King Hezekiah from Isaiah 36 & 37. I won’t tell the whole story here (but if you click here you can read it) but suffice to say it tells of a major threat of disaster he, as King of Judah in Jerusalem, received from the marauding Assyrian emperor, Sennacherib. It’s initially verbal. But Hezekiah, after an initial grief reaction, tearing his clothes, seeks God, and receives through the prophet Isaiah, God’s stirring, strengthening response. By the time then a written threat arrives from Sennacherib, Hezekiah is calmed and ready. He walks into the temple, spreads the letter out before God and effectively says, “You, Lord Almighty are God, maker of everything, and over everything and are the only God, and God over all. See what this man is saying, insulting. You’re God, not him. Over to you” . St Paul writes that one of the reasons that Old Testament events were written down was that they were to serve as examples and warnings for us. And as the account of Hezekiah runs on, it’s spine tingling, and has provided me with such encouragement as to what God has done, what He can do, but more than that, who He is in the face of any danger, threat or loss for any of us. It’s not necessarily promising me deliverance from this cancer, but it is reminding me that something – Someone – else has the final word. And that Someone was the same One who stood in full glory after His resurrection from the dead and said,

“Do not be afraid. I am the First and the Last. I am the Living One; I was dead, and now look, I am alive for ever and ever! And I hold the keys of death and Hades.”

Of course, it’s the Lord Jesus Christ. The final Word.   

As life moves along each day, He’s giving us a ‘normality’ and peace. It’s been great having Tim & Kathryn Handley with us from New Zealand, both here as journeying friends, and acting as my driver and our help around the home. We returned Tom to Cardiff for his final year last week and Lydia heads off to her college placement at a local children’s nursery each day. Joshua prepares to head off to Moorlands Bible College in a couple of weeks…do please read the new piece he’s written on the column alongside this one. It so encouraged me.

All the while, I find myself both drawn and drawing deeper, during the day (sometimes in the early morning hours, lying in bed) in prayer, in worship, seeking to deliberately “practise His presence”, as things move on.

“Peace I leave with you; my peace I give you”

And He is.

   

Returning to the Valley

The news is not good and my mind is both a-whirr and awash with thoughts, feelings and emotions. I’m writing this in the wee, small hours of 9th September in our darkened bedroom.

Yesterday afternoon, Clare – one of the very supportive specialist nurses at the hospital – rang and asked if I could come into the Oncology Department at 4.15pm. My MRI head scan results were back. I sensed it wasn’t great.

So, taking our long-standing friends and former neighbours at college in Auckland, Tim and Kathryn Handley, currently staying with us, off I went.

Dr Goodman asked how I was. “Generally OK, but aware of fresh small lesions/tumours appearing under my skin on my upper body.”

“Well”, he replied, “I’m afraid I’ve not got good news”. He then went on to describe that my head scan late last week showed multiple tumours in the brain, and whilst generally in the left hand side, were somewhat spread out. It seems that the pembrolizumab (aka Keytruda) is having little or no effect chasing melanoma secondaries in the brain. He’s also concerned that the drug is showing signs of increased ineffectiveness in my body generally. It’s either holding things, or the melanoma is now advancing again.

He asked if I’d seen any signs of effects on the brain. No headaches or dizzy spells, but I guess I’d been aware of an instance a couple of weeks ago, talking with Catherine, of a strange speech episode where, mid sentence, I’d started making an elongated “uuuummmmmmm” and couldn’t produce any words. Then some ongoing, occasional inability to string a sentence together.

They’re all possible symptoms of something going on.

My clarifiying questions were many.

Apparently the brain is a very good gate-keeper and works hard to keep out infections, so good that it can also keep out the drugs like pembro that can help get rid of tumours like this.   

As we talked, Dr Goodman was clear that we’ve now reached a particularly serious stage from which it is difficult to return. Medically, some small hope is offered by five short doses of radiotherapy to shrink the tumours.But because the tumours are relatively spread out, they can’t be targeted by a specific beam and so it’ll have to be general radiotherapy to the brain. This can have its own consequences in the form of possible memory loss and an increased inability to concentrate, something which could then further deteriorate with time. I’ll also lose my hair.The positive effect of the therapy is that it may “bump start” the brain into accepting the pembroblizumab/keytruda in. But, he emphasised, it’s only a slim chance this will happen.

I start the week after next, and for the next few days, I’m on a course of steroids as part of the procedure. He also told me that the presence of the tumours means I’m prevented from driving from this point on.

We’re left as a family, once again, rocked. Whilst news like this has always been a possibility, it’s news that we hoped nonetheless we wouldn’t hear. As Catherine and I gathered the children around the table when I got home (ironically 23 months to the day since my original diagnosis) and I walked everyone through the scenario, there were plenty of questions, but plenty of tears. “I hoped you all wouldn’t be facing this so soon after losing Ben”, I struggled to say. Together, we considered many things, both practical arrangements and then who is getting what support from where, at least for the next few days and weeks.

There’s no idea of time. I could suddenly deteriorate. The fact I haven’t had a seizure with the number of tumours present is a good sign, showing they’re currently in more low risk areas. But the fact that I’m now barred from driving shows the risk of further development is nonetheless high. But God. And His praying people.

Where do I go with all this and what do I feel? Internally for me, fresh anxieties and fears have surfaced – I’ve always felt particularly bothered about any of this ever affecting my brain. But once again, where countless others might currently want to say to me, “Where is your God?”, I find myself drawn back to the One who walked on the waters as Lord of all creation – and the One who now comes and walks on the waters of my troubles and fears. The One who alone has the words of eternal life. The One who returned from beyond death. And the One who is Life, even in the face of death. And so already, in the hours after this news, whilst I’m conscious of a big emotional tsunami rolling in, I can sense His promised peace. None of this I say glibly because “Well, he’s bound to…he’s a vicar-type”…no, I say it based on years of seeing the promises and power of His Word ring true through all the circumstances of life and then seeing Him at work in the most profound and life-changing ways in both my and others lives. 

And so as I sit here writing this in our darkened bedroom, I’m encouraged as I read these words of Jesus spoken to His disciples who were about to face the most brutal persecutions and difficulties –

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” (John 16)

That encourages me as I face today. We’re going to face this a day at a time.

We sense we’ve got a dark valley ahead of us, but as Catherine and I lay on our bed together last evening, we joined in a brief prayer, “May we know you near us, Lord”

Milestone, curls and fresh challenges

I’ve just arrived home for the second time today from the oncology department. Once for a clinic and once for my fifth infusion of pembrolizumab. It’s a world of which I used to know nothing, but is now such a regular part of my life that I can know and laugh with many of the staff, and many of the department patient routines feel so familiar to me. I saw Dr Ayman Nassar for the last time this morning in clinic before he moves away to take to up his new immunotherapy research post. It was good to be able to thank him for his expertise as well as his very particular care and companionship on this journey…he will be missed.

Out for my 50th with all the family (click to enlarge)

It’s been a quiet couple of months in terms of needing to post updates – something of a good sign with melanoma which, as many will know, can move with a rampancy and offer, as my oncologist said early on to me, a normal life expectancy of 8-10 months from diagnosis. To have been able to have celebrated my 50th birthday last month – something which 22 months ago was an impossible milestone to have considered – felt good.      

This morning, I received the results from a PET scan I had last week. They contained both positives and some possible causes of concern. The radiologist summary report refers to “disease progression”. Some of the existing small tumours under my skin, whilst they haven’t grown, are showing some signs of fresh metabolic activity and there are also fresh small tumours – some I’ve been aware of on my torso –  but all, it seems, are either just under the skin or in non-threatening places inside. There’s also a possible one in the bone of my skull for which an MRI scan has been ordered. Ayman assured me that it is a satisfactory result and one which falls within reasonable and expected parameters for response to pembrolizumab at this early stage in having it.

I think, having felt fresh lumps in the last little while, Catherine and I thought there might be some things for us to deal with. I think we realise that it’s always a possibility and it’s been freshly sobering. Then the death of Rachel Partridge, wife of my (until-recently) colleague Mike Partridge, two weeks ago had a similar effect and reminded us of what we’re facing. Both she with her leukaemia and me with my melanoma, jokingly referred to each other as “tumour buddies”…she was a special lady and one whose journey through her illness touched many people. She’ll be missed, not the least by Mike and their children – Felicity, Will, Ellie, Bethany and Hannah. 

Lydia, me and my curly hair

My reaction to the pembrolizumab, in terms of side effects, continues to be negligible. Apart from the now-not- so-regular bouts of extreme fatigue, a funnier one has been that it turned my hair curly with no warning and without it having to fall out. It caused no small amount of hilarity in the family, Catherine loved the new look. I’ve since had my hair cut very short, and that was only a few weeks after I lost my beard of 20 months also.   

The lessening of the fatigue has allowed a month or so of fun in the family with the great summer weather. With it being my 50th, it was wonderful to have my parents and brother from NZ and Canada respectively there for it. Catherine and I were able to have a big joint 50th party at home with many old and local friends; Ma, Pa, Catherine (sometimes) and I were able to enjoy some great trips to Cornwall and London…but we also went sailing across Torbay and beyond with old friends Steve and Liz. We’ve watched Simeon ride in the off-road Enduro motocross event on his KTM motorbike, see Josh perform at a public event in Honiton as well as him and I go to the Goodwood Festival of Speed in West Sussex. I was able to accompany Tom to his placement in London at the Centre for Social Justice, as well as us spend time with old friends from the distant past either at home or away. Among some of our walks and visits, Catherine and I visited the National Trust’s Coleton Fishacre in south Devon, the old ‘Art Deco’ style home of the D’Oyly Carte family of the opera and Gilbert & Sullivan fame. We’d been there with the children twice many years ago and I had many clear memories. But it proved to be yet another unexpected ‘tripwire’ grief moment for me. It was a combination of discovering that the D’Oyly Cartes had lost their 21yr old son in 1932 in a road accident, and walking in the garden knowing it had been a place of huge grief and suddenly seeing places Ben had been and a spot where we’ve taken a family photograph in 2000 that saw me so utterly undone and tears for both of us flowing in a fresh wave. It was right…it had to happen, it was all part of the grief that’s working it’s way through, inside and out, round and about. I felt better for it. But there’s no time limit to it and to when it can strike.

Click to enlarge

In those times over the last few months when I don’t find prayer comes too easily – either through my own lack of words, I’m grateful for the daily “Bible-in-a-Year” reading app on my phone which can take me to a place where I see not only the utterly amazing characteristics of God – each day with a psalm, an Old Testament and a New Testament reading, I can see His holiness, His faithfulness, His love – that I can pause and use them in even a brief prayer back to Him in thanks, or a time of quiet worship for who He continues to be there for me, for us, no matter what I might see.

I continue to “wrap up” those things – people or situations where we long to see change – within the character and promises of God. I had a fresh reminder about it last Sunday at church when Mick Taylor from Citygate Church in Bournemouth (listen to the whole thing here) helped us consider Abraham in Genesis 18 as a pattern of how we can do that. We considered particularly when God shares with Abraham that he is planning on destroying the appalling wicked cities of Sodom and Gomorrah. God was under no obligation to tell Abraham about this, but He appears to do so to prompt Abraham to engage with Him. Abraham hesitatingly, yet boldly requests God to consider not destroying it if he finds 50 righteous people there, and Abraham concludes his request saying, “Will not the judge of all the earth do right?” In other words, Abraham was appealing to God’s own righteous and good character to do what is right. And God agrees with him to relent if he finds 50. But Abraham boldly pushes on to 45, 30, 20, 10 people in the cities. It’s about a degree of boldness and taking seriously what we come to understand of God’s character as we read of it in action in the Bible. So, for us today, an example might be for us praying for a friend, family member, or a former church member, who has walked away from God for whatever reason. We can (knowing the Lord Jesus Christ who describes himself in the New Testament as the good shepherd and who leaves the ninety-nine sheep and goes in search of the missing one) wrap up your concern for the person or situation in the character and promise of God and bring it to Him in prayer. “Lord, I can’t easily bring them back, but you, good shepherd, have promised to do just that. Please Lord, go after him/her… please do that”    

“Will not the the Judge of the earth do right?”

…I have continued to use that line over the last year or two as I pray regarding this disease in my body and where it might lead, considering Catherine, my children, my parents. Trouble is, we don’t always know what ‘right’ is. Sometimes it’s “Yes”, sometimes “no’, sometimes “wait”. But whatever, I remain peaceful in my situation for whatever outcome. If Christ can have beaten our ultimate enemy – death – and can usher me into His wonderful eternity, He is more than strong enough to look after and meet with my precious ones left behind me. But I pray on, sensing to remain for the time being might be best…

Pembrolizumab begins

Writing from my treatment chair in oncology two days ago… 

There’s a strange feeling of déjà vu and a bittersweet familiarity with what is happening today. Sixteen months on from when I was last here, once again I’m connected to a drip receiving a fresh round of immunotherapy, this time the very new pembrolizumab which last December was made famous for its remarkable effect on former US President Jimmy Carter, also diagnosed with advanced melanoma (click here to read a brief article about his situation).

Once again, I’m plugged into this surreal world of the oncology treatment ward where seeming normality coalesces with the utter foreign-ness of it, where calm is sometimes a thin veneer for an anxiety that’s gripped an individual and then swept through family and friends collectively and where cheerfulness rubs alongside all the ‘ifs’ and ‘buts’ that the mind trips around in an attempt to cope with ‘today’.

This armchair I’m sitting in, the chairs we all sit in around the amazing Cherrybrook ward, contain unique people each with a story of life interrupted, overtaken by a diagnosis they perhaps always thought was going to be someone else’s news, not theirs. I walk through the ward and its various bays to my own bay and chair, past some who’re plainly unwell, and still others who look as any other person you might see in the street. But here we all are. All on the level. All touched by cancer. It’s wonderful having a great team of nurses who laugh, joke and talk as if we’re all sitting on a bus going on holiday together. It’s also been good today to share the journey with a younger woman sitting near me who has a similar story to mine, also living with melanoma, and like me, had her first brush with it twelve years before (I’m told this is a very common period – 12 years on, and then melanoma comes out of hiding) and now on the same drug therapy as me. Having had four doses already, she’s a real encouragement saying how easy the pembrolizumab treatment has been both in terms of side effects and the flexibility of time between doses.  But unlike last year’s four 2hr sessions for ipilumumab, this drug only needs a short 30-45 minute infusion each session. It’s hardly time to put my feet up and relax.

The two of us twelve months ago

Ricocheting around my mind though is the news Ayman gave me on Thursday that he’s leaving the hospital to take up another appointment in immunotherapy research. In so many ways, it’s not a surprise as his interest in it and the science behind it is clear. He’s plainly got a lot to offer in the ongoing development of this breakthrough therapy for the various types of cancer which, until recently, had no significant treatment. But I’ll miss him because as my regular doctor in the Exeter Oncology Department, he’s been a real rock, seemingly always nearby or on the end of the phone to answer questions, to clarify things, to reassure…and to make it all feel quite everyday. My visits to both the clinic and ward won’t now be the same without him in the times to come. 

48hrs on….Sunday afternoon

Catherine at Overbeck’s, Salcombe

Yesterday, Catherine and I meandered down to Devon’s south coast, to beautiful Salcombe and the gardens of the National Trust’s Overbeck’s. Apart from feeling pretty unwell while there and wondering if this was the result of either dabrafenib’s withdrawal or pembrolizumab’s entry, we had a good time out enjoying rural Devon, always incomparable on a good spring day.

But our reactions to my seedy state both in Salcombe and during the night, combined with periods of fatigue, indicate that our internal radars are on heightened alert as the new drug settles in and either helps produce an effect or has none. This state of alert can in itself be tiring. But it’s complicated by some tough things we’re facing with our young ones and decisions they face. The ongoing effects of grief for them and the anticipation of either what is or isn’t round the corner, is hard.

At the same time, I found particular fresh encouragement in words of Jesus in the Bible that stirred me the other day…

“On the last and greatest day of the festival, Jesus stood and said in a loud voice, ‘Let anyone who is thirsty come to me and drink. Whoever believes in me, as Scripture has said, rivers of living water will flow from within them’. By this he meant the Spirit, whom those who believed in him were later to receive” (John 7)

It’s an invitation to come and know the unparalleled, the matchless presence, strength and comfort of God found uniquely in Christ Jesus. If He’s saying nothing else here, He’s saying that He alone is the source and author of life, the one who, when I come to Him, stick close with Him, gives true satisfaction and meaning to life. Drinking from anywhere else won’t satisfy or save. This One is the incomparable best and we can walk in His wake, safe and secure. I found myself doing just that as I lay awake in the night, unable to sleep for some discomfort, tuning in with Him again.

As I sat outside on Saturday in the early morning sun, coffee in hand, the invitation I’d read from John’s gospel a few days earlier was quietly reiterated in a different way as I read from the Psalms words of King David, written 3000 years ago…

Hear my cry, O God;

    listen to my prayer.

From the ends of the earth I call to you,

    I call as my heart grows faint;

    lead me to the rock that is higher than I.

For you have been my refuge,

    a strong tower against the foe.

I long to dwell in your tent for ever

    and take refuge in the shelter of your wings.  (Psalm 61)

They’re words I remember impacting me as a 20 year old. They impacted me afresh this weekend and I made them my own. They’re words we can all use.

Hurdles and Tripwires

 

As a child, I used to love having fun in our garden with my magnifying glass, focussing the sun’s rays on all sorts of things – dry leaves, fire crackers, patches of grass – and watching the sometimes fiery effect. Drawing all that light and heat, directing it onto one spot, was enormous fun for a curious, if not somewhat mischievous, ten year old boy.

Whilst last Thursday wasn’t what I would call great fun, it was a day that did see us at times smiling and laughing. But it was a day that felt like lots of events were being focussed into a magnifying glass and concentrated into one place, one day. As well as it being the first anniversary of Ben’s death, it was Joshua’s 19th birthday and the day for receiving results from my latest PET scan of the previous week. Time gently propelled us from one event to another through the day. A walk mid-morning near Broadclyst with my parents-in-law to the spot where, on the 27th December 2014, Ben suffered the seizure that led to his four month hospitalisation, was followed by a family pub lunch. Onwards then we went, in the early afternoon, to the hospital for my results followed by a visit to Mardon House, Ben’s home for his last 3 months, to leave some memorial flowers. Lyn, Bernard and the staff welcomed us so warmly and as we sat over a cup of tea with them, so many recalled how special Ben had become to them while he was there and how they still remembered him so fondly. We were able to spend a few quiet moments alone in his old room at Mardon – and in the space where he breathed his last breath – and let some tears fall.

After a visit to his grave to lay flowers, we managed to affect a change of gear and the day concluded with a good evening around the meal table with some close friends of Joshua joining us to celebrate his special day.     

Me in the PET scanner…a mobile one in a lorry trailer, contracted by the NHS that moves around the major hospitals in the south-west. The scan takes 45 mins

At the end of it all, we were tired, somewhat relieved, but thankful to Father for the way we’d been held. We felt the day had been marked suitably and that we’d done well. The fact that my scan results were generally positive helped matters enormously for us all. Using the very obvious tumour on my neck as a ‘marker’, it seems that there was an initial general shrinkage in most tumours in response to the Dabrafenib capsules over the weeks since February, but now the drug has started to loose its effect and there’s been an expansion again over the last two or three weeks. The result is that they all appear to be increasing again to their original sizes. Consequently, the scan showed everything more or less as it was on the previous one in January. The good news however is that there’s no evidence of anything new, and what tumours there are don’t currently appear in any life-threatening places. I’m now scheduled to start my new immunotherapy treatment on Friday 13th May. Although the new three weekly infusion of Pembrolizumab will mean careful event scheduling in our family diary – time away, holidays etc – I certainly won’t miss the current twice daily timetable of swallowing capsules as it’s limited when I could and couldn’t eat.

Ten days ago, Catherine and I were able to attend a day in Worcester for bereaved parents organised by the superb UK Christian charity, Care for the Family. It was a heartening experience to be sitting together with others, all of whom were parents who’d lost a child – some in childhood, some as adults, some specifically to suicide. Sharing together in our smaller groups through the day, there was an unspoken understanding from all to each of the journey we’re together on. As Mike and Kath Coulson, leaders of Care for the Family’s Bereaved Parent Support spoke, they helpfully named something we’ve experienced both since my diagnosis and Ben’s death – hurdles and tripwires. The hurdles are the events you can plan for – anniversaries, Christmas, birthdays – times you know are coming and which you know will probably be difficult, but strangely can be relatively alright as you’ve braced for them. It’s the tripwires however you can’t plan for…they’re the problem. They’re the ones you can’t anticipate. A smell. A sight. A piece of music. A place. A word. And suddenly a strong memory appears and grief just catches you out again. For Catherine a few weeks ago, it was seeing a small boy wearing dungarees. She remembered four small Clark boys, including Ben, wearing them. She was so unexpectedly tripped up. And no one would necessarily know.

We’re looking forward to the continuing get-togethers with these precious folk…it was so timely ahead of last Thursday’s anniversary. As we returned home to Devon that evening, we called in – invited – to Sam and Kirsty’s wedding reception in Nailsea. Sam had been one of Ben’s best men, and Ben would have been one of Sam’s. It was so great to be there to see them both. Sam had been such a loyal, close friend over many years. But I had to catch myself and swallow hard at one point as I saw a few of Ben’s old friends – many now married – and thought, “Ben and Dabi should have been here today. Why, Lord, why?” As I’m writing this now, my jaw is clamping and tears are forming. Tripwire moments. And if it’s me, it’a also numerous others in their losses…especially I think of the number of lovely people we met last Sunday when we spoke at Christ Church, Woodbury who’d lost children. It was a privilege to have them share with us afterwards and know a quiet understanding between us. But I also think of special family friend Carol, whose husband Neville, my godfather, died suddenly very recently. I particularly remember conversations out over coffee with him on my visits back to New Zealand over the years. I shall miss him.

As Catherine and I sat with our good friends Matt and Louise Wilcox over breakfast last Saturday morning, having had them stay over with us the night before, we all read from the second chapter of John’s gospel in the Bible the account of Jesus at a wedding in Cana where he turned water into wine. As we pondered it, Matt remarked how noticeable it was that Mary, Jesus’ mother, when they ran out of wine, simply turned to him and said, “They have no more wine”. After what seems like a rebuff from her son in response, she quietly turns to the servants and says, “Do whatever he tells you”. And what follows is a sign that points to His identity.

But why the initial word from her to Jesus? Matt helpfully highlighted the sense in which it seems Mary knew. She knew whatever the situation, Jesus was bigger than it. For a couple getting married, Jesus saved them from the social shame and stigma within their culture of a ruined wedding party. But more than  that, there’s no situation, no loss, no lack, no grief, no nothing that ever catches Him out and leaves Him incapable to help, to be alongside us even when it seems to be in the darkest place, to give solace, hope, to transform, to forgive, to renew, to be what we need Him  – Emmanuel, God with us – to be.

He’s our continuing strength – our life. 

Memories and Remembrances

The memory is such a powerful thing, with both unfathomable depths and an ability to take us back especially if its connected via an emotion or music to moments in time both precious and painful. As I write, I’m on a train listening to Bach’s St Matthew Passion and Beethoven’s ‘Kyrie’ from his magnum “Missa Solemnis’, both profoundly sublime and powerful works. They immediately transport me back to my late teenage years, to my time as part of the Royal Christchurch Musical Society choir, when we performed them with the Christchurch Symphony Orchestra conducted by Bob Field-Dodgson. Also my music master at Christ’s College, he was a man who had a profound influence on me, and through his mentoring and music unknowingly prepared the ground for a growing encounter with Christ only a short time later. But listening now to these works re-connects me and takes me on a journey into the heart where I find a wistfulness for those times, but a deep sense of gratitude for them at the same time nonetheless. The train I’m on is heading to Manchester and onwards into the Peak District to spend a few days with Rob and Di Shimwell. Rob was my senior colleague from the late 1990s at St Mary’s Upton on the Wirral. My memories of the years spent working with them are equally significant because of the influence they had on my life. From them I understood both the challenge  of avoiding superficiality in my ministry and the all-sufficiency of the all-surpassing and boundless work of  Christ for the depths of our situations and lives, of the importance of addressing Him to the places in the heart, mind and will from where we make our decisions and live our lives. But they also encouraged me in my ministry to know where to stop and let the Holy Spirit take over – that He is the ‘deal clincher’ and only He could ultimately cause people to drink from Christ’s well. Only He also could do the ultimate work in the hearts, minds and lives of those to whom I was ministering whether through preaching or pastoral work. I’m so thankful for the Shimwells.

My visit to them follows a 50th anniversary celebration ten days ago at the church Catherine and I were a part of in the late 1980s/ early 90s in Hawkwell, Essex. Its then rector Tony Higton, and his wife Patricia with the church family, gave us a great vision as to what a New Testament church could be like. Returning after so many years was both wonderful and strange, taking me back in my mind to a kind of age of ‘Eden’ when it was just newly wedded Catherine and me, before the particular joys and usual struggles of parenthood, but also the pain of loss. It was grand to connect with so many precious old friends.

Ben’s headstone…click to enlarge

But the memories are heightened in another way at the moment as we approach the first anniversary of Ben’s death on Thursday next week. We meet it with such a mixture of feelings. His headstone was finally installed two weeks ago after some weeks of planning and design. It marked the end of the formalities and signals a new phase of settling into the calm depths of loss, with its sometimes warm, sometimes cold currents. The anniversary for us as a couple looms with a heaviness. For each of us, for all us, there are different reasons. Perhaps hard to describe, I find myself with a temptation to guilt that Ben, whilst he’s always at the very forefront of our minds, no longer features in our practical plans and everyday considerations as a family and won’t ever again, that we’re moving on to fill in gaps, that he doesn’t feature when I sign cards or letters from the family…it’s now just “Jeremy, Catherine, Simeon, Thomas, Joshua and Lydia”. It’s less painful to just say “from us all”. As with the year rounding from 2015 into 2016, I think the most painful part is to feel that he therefore slips further away from us as the first anniversary approaches…the photos hold him in time, but time itself is moving so inexorably on.

But then hope’s whisper is heard. We had inscribed on Ben’s headstone words of Jesus from John’s gospel that I spoke at his burial, words that remind us that what might seem like ‘lost’ is simply, because of Ben’s faith in Christ,  lost for the time, from sight. As Jesus uttered them, he finished with a simple but profound question –

“I am the resurrection and the life. Whoever believes in me, though he die, yet shall he live, and everyone who lives and believes in me shall never die. Do you believe this?”

We can stand there and, even through tears, say, ’Yes’.

But as we live with grief, I realise the importance of something that has been largely lost to the church…the place of lament. So quickly do we want to rush into fixing painful things, praying for light and victory, affirming (often with a lot of truth to back it all up) what’s true for the present and the future, that we miss the moment, the seasons when God meets us in the darkness. Over the last few months, we’ve sat with friends pained by infertility, others having lost a precious spouse, still others facing terminal illnesses. While of course there’s a place for words, particularly prayers of comfort and help, there’s also more than a valuable place for times of silence, of wordlessness. Old Testament Job’s friends were arguably at their best when they sat in silence with him regarding his tragic situation for seven days. It’s only as they opened their mouths and started to speak that they laid themselves open to God’s ultimate rebuke, despite often sound theology on their part. But where words can be used, there’s the place for the shaking a fist in the way the writer of Psalms sometimes did. There I can find a wide range of emotions used that allow us to express, in those times of hardship and suffering, our own desolate feelings, a place that provides words to my complaints and questions to the Lord. Psalm 13 powerfully expresses so much for me…

“How long, Lord? Will you forget me forever?

How long will you hide your face from me?

How long must I wrestle with my thoughts and day after day have sorrow in my heart?”

I hold onto the fact that, more often that not, my encounters with God in the dark places have ultimately produced more fruit in my life than when the sun is always shining and the sky always blue.

And so we’ve continued to walk on. Catherine and I have had some particularly special times in recent weeks speaking, recounting our story publicly with the church families at Riverside Church and St Thomas’ Baptist in Exeter, then just last weekend at Silverton Evangelical Church north of the city. As it seems to minister to people, sometimes through our tears, so the Lord also seems to encourage us as we recount the pain but also His constancy, even with the unanswered questions of these last eighteen months. 

But we walk on into what seem to be fresh challenges for me health wise. The cancer is plainly on the move again. The Dabrafenib medication I previously described has been very effective in shrinking the newer tumours on my neck and upper body. And news that the original tumour on my lung has now shrunk so significantly as a result of last year’s Ipilimumab treatment and that it’s being described as effectively inactive, have been so encouraging. But in the last two weeks, the tumour on my neck has started to increase by small degrees again. It’s no surprise in many ways as the Dabrafenib is known to be effective only for a few months. I’m booked in for a fresh PET scan this Friday, and see “Dr Optimistic and Encouraging” (aka Ayman Nassar) on the day of Ben’s anniversary next week for results. He’s expecting to start my previously delayed Pembrolizimab treatment in May. All this of course starts to ramp up the tension levels in the family. Last week, when with friends, I felt Catherine’s hand quietly reach out for mine. I knew what was going on. Growing tension. No need even to turn my head. There was a quiet understanding.    

In the meantime though, I’m feeling as well as ever and it was great to celebrate Catherine’s 50th birthday last week and I look forward to joining her in age on Bastille Day.

As ever, we covet your prayer, and thank you so much for it.

“Grace and peace to you from God our Father and the Lord Jesus Christ be with you all.”

Having certainty

Just when we were expecting one thing last Friday at the hospital, it all changed. Having arrived for my “check in” appointment, necessary for the medical team to both see that I was in good condition for treatment and for placing the drug order with the hospital pharmacy, I settled myself down in the FORCE cancer charity’s comfortable lounge for a couple of hours ahead of my first infusion of pembrolizimab. But within an hour, my phone rang.

“Mr Clark, we’re so sorry, but there’s been a problem with the finances surrounding your treatment today. There’s nothing too major, but could you possibly come back to Oncology and we’ll explain more.”

So, back I went, wondering what could have suddenly happened just an hour or so ahead of my treatment.

Soon all become clear. Evidently, one of the pharmacy team picked up on government regulations that state if an individual has been treated with ipilimumab as a first line treatment (as I have been), then they can’t be treated with pembrolizimab directly after (or as a ‘second line) unless the local hospital pays for it. Another drug has to be used first. If that drug proves to be ineffective in stemming the tide, or causes ongoing or bad side effects, then pembro can be deployed as a ‘third line’. My oncology team’s frustration at the system was palpable…plainly, as pembro is such a new drug, there’d been no earlier opportunity for them to discover this.

So….I’m now officially not just an immunotherapy patient, but a chemotherapy one also as I’ve been placed on a cancer drug known as a BRAF inhibitor. Simple to take – just two tablets twice a day – dabrafenib is designed for use in metastatic melanoma to inhibit or switch off the faulty signal from the BRAF protein within the cancer cells, so preventing the cells from proliferating. But it’s generally only effective for a few months, so it’s pretty clear that, all things being equal, I’ll eventually be put onto pembro. With this new chemo drug, there’s the risk of some side effects (including fresh skin cancer) but all of them only affect slightly more than one in ten people. Since starting it on Friday, I’ve had a somewhat ‘heady’ weekend as it’s been kicking in, causing my skull to feel like it’s pulsating and with a mild headache to boot. Despite it, we had a relaxing weekend away near Chichester staying with Catherine’s brother James, our sister-in-law Annabel and their family, and speaking at their church on Sunday night. It was a real privilege to share – even through tears – our story with them and once again it was encouraging to see God using it to connect with people at various points.     

In one sense, although it’s a change of treatment and a change of pace, in another way, it’s business as usual but with some added pit stops and additional checks along the way. But along the path, I see God at work in and around us. As I waited at the hospital on Friday, I thought about a recent conversation I had in the barber’s shop. I’d never met Tess before, but as she cut my hair, we talked and the inevitable questions of life and what I was did came up. I figure, at times like this, I can either shrug the question off with a lame “life’s fine, thanks”, or I can see it as a door opening in front of me to walk through and talk about the things that really matter in life, to share with a fellow traveller who lives with the same hopes, fears, and unanswered questions anybody else does, something of our journey, and to point to where hope can be found. She stood, listening quietly, continuing to cut as I told the story of the last twelve months. Then she paused and asked, ‘So with all that, does it make you ever doubt your faith?’  Strangely, again at the hospital this last Friday, one of the medical assistants and I were chatting about my situation. She then asked the same question. 

I’m so aware that both these two people gave voice to a question that many others hearing our story have wondered about. And it’s a very natural one because it raises all sorts of questions about God, where He is, why He lets things like this happen, what can we reasonably expect from Him and chiefly perhaps, is there even a ‘god’ at all if things like this happen?

So how do I answer?  I need to look back. Right from childhood, I’ve had a ‘sense’ of God. Only when into my adulthood, did I understand that this is likely to have been there because, as the Old Testament book of Ecclesiastes puts it, God “has also set eternity in the human heart”…in other words, that He has given each of us, all of us – even the most avowed atheist or humanist – a sense of there being ‘something more’. It’s something that’s been planted deep, deep inside of us all. It’s just that for some, it gets overlaid with all sorts of other things and it’s drowned out. 

Still looking back, then when I was in my early twenties, and through a strange set of circumstances, I came to know God in a personal way as I was shown and introduced to Jesus Christ as I’d never been before. My life and priorities were turned on their head, so impressed and taken was I with Him.

So, for me now, living and continuing to face circumstances like this, does it threaten to drown that early sense of God and of the eternal? Does it challenge the faith that then became personal and real from my twenties’?

Well, if my faith was based on feelings, I suppose I’d be something of a wreck by now. Feelings are so fickle, so fleeting, so affected by circumstances, and can spin round like a weather vane. But right from when I first started to organise my life around Jesus, when I first came to really know him in that personal way those thirty years ago, I was and have been so struck how the Christian message is one founded on facts. I think of Dr Luke, writer of the gospel named after him in the New Testament, who states carefully at the beginning of his book,

“Inasmuch as many have undertaken to compile a narrative of the things that have been accomplished among us, just as those who from the beginning were eyewitnesses and ministers of the word have delivered them to us, it seemed good to me also, having followed all things closely for some time past, to write an orderly account for you, most excellent Theophilus, that you may have certainty concerning the things you have been taught.”

There’s more than a hint of some careful investigation that’s gone on. He’s been seeking to deal only with what’s actually happened. I see the interesting use of the word ‘certainty’…it’s not a popular concept when talking about matters of faith these days.

Along with this, there’s the old question that was asked of me years ago by a family friend bothered that I was getting a ‘bit keen’. “But Jeremy, you can’t believe everything you read”. The context of the conversation was one about the reliability of the bible. It was a question again of facts. Some say that as it’s 2000 years since the events, there’s been so much opportunity for the written words to have been changed, to say nothing of all the changes that might have taken place  – the ‘Chinese Whisper’ effect – while it was still being passed down by word of mouth before being actually written down.

That objection doesn’t take into account at least two things of importance.

Firstly, within cultures where the oral tradition was central, the accurate passing on of the stories and sayings from one village and generation to another, was vital. It was unthinkable that they should be changed. We can perhaps insult these cultures with our modern view on how information is transmitted reliably.    

Secondly, it doesn’t take into account the vast amount of paper evidence we have of the unaltered words in scripture. The fact that we have an almost embarrassing wealth of ancient manuscripts – copies of the original writings – for the whole of the New Testament from a relatively short time (between 130-350 years) after it was originally written….much, much more than we have for most of the main texts on which we base our knowledge of the ancient world. No classical scholar would doubt the authenticity of Herodotus, Thucydides, Tacitus or Livy when studying ancient Rome or Greece, yet the earliest copy we have from any of them was written 900 years after the original and with many, many, many fewer manuscripts than we have of the New Testament.

(Click to enlarge)

The text has remained largely unchanged. Where there are changes or there’s an uncertain translation, it’s over very minor points and these uncertainties are all acknowledged in the footnotes of our modern translations – no-one’s trying to hide anything. It shows that, contrary to popular thought, the church, its councils, or various individuals with a barrow to push, have not altered it, added to it or changed it to suit whatever purpose they might have had.

Then there’s the reality of changed lives. I often think of the disciples, a rag-tag bunch of fisherman and other sometimes dubious professions of the day. They all fled for their lives at the first hint of trouble when Jesus was arrested. And the one who remained nearby then denied knowing him at the first opportunity. What accounted for their subsequent transformation? What caused them to metamorphose into a posse of individuals who would together and one-by-one be responsible for changing the known world, prepared to face being disowned, abuse, beatings, persecution, imprisonment and death? Something startling in the very least. That ‘something’ is asserted to be the resurrection of Jesus Christ from beyond the grave. Some have claimed the disciples just stole his body and made up the rest. But (apart from the near impossibility of sneaking past a pair of Roman guards on the tomb) would you die for something you knew to be a lie? Some have asserted the Jewish leaders took the body to prevent any stories of a resurrection that Jesus himself had predicted. If this was the case, why then didn’t they produce the body when the disciples started claiming a resurrection had happened? Some have said it was a mass hallucination…they just thought they saw him because they so desperately wanted to. But these guys were robust fishermen and tax collectors. Added to that, Thomas won the prize for doubt…and even he was then finally convinced. As well, the gospels describe how over 500 people on eleven different occasions saw Christ, over a period of forty days. And on one of those occasions, He cooked and served a fish breakfast. Figments of our imaginations or ghosts don’t cook breakfast. Hallucination is a difficult claim to maintain.

And then there’s the evidence of countless millions of ordinary people over two thousand years who’ve had their lives transformed, having believed on Jesus Christ, his death and resurrection, many set free from the most appalling backgrounds.

Doubts about Lord Lucan’s life and death might continue to circulate for a very long time, but there’s no doubt in my mind about Lord Jesus.         

And if Christ did rise from the dead, it changes everything for everyone, both those who consider themselves ‘religious’ * and those who don’t. Death, the one thing that humankind has never been able to beat, conquer or avoid, Jesus came back from beyond its gates. No one else has done that. No prophet, teacher, sage or wise guy. And if he came back as one who’d conquered it, having said he was the way through it, then none of us can afford to either ignore him or even remain apathetic towards him. We leave ourselves in a dangerous position. In the very least I – we – need to take his words and deeds, what he did on the cross, recorded and passed down by reliable witnesses and writers, with utter seriousness. I place my life and death on these facts. On Him. We can stake our lives on him. And he calls us all to pick up our crosses and follow him, sacrificing our little ambitions and ‘gods’ for a life with guaranteed long-term benefits.  

The tough times come and our feelings might spin around. Lydia was on a First Aid course last week, and when it came time to practise CPR, she found herself left with the last of the resuscitation dummies…and it was named ‘Ben’. It was a painful moment, thankfully picked up by a perceptive tutor. It caused a few tears both there and at home for more than just Lydia. Then, only a day after, I walked past Ben’s photo in the hall and seeing him, had to stop and gaze at the picture as I was overcome with a fresh wave of loss, grief and a hundred questions. But then, with no real answers as to why he died when he did, our ‘heads remind our hearts remind our heads’ to rest on Christ, rest on the things we do know, to ‘have certainty concerning the things you have been taught.’  Each of us at home can find peace and a sense of joy and life, despite. If Jesus is the ‘bookends of history’ – the Alpha and the Omega – then whatever comes our way over these weeks and months to come, we can trust Him through them all. There is no greater.    

_______________________________

*I’ve often struggled with the word ‘religious’ and my heart often sinks when someone says they or I are ‘very religious’. It’s so often used to describe a life of pious observance of rules and regulations, of austere, lifeless church attending and kill-joy living. It’s also then shorthand for something akin to a hobby that some might have while others have football, knitting or bee-keeping etc. It seems to me that friendship with Jesus and following Him isn’t about any of these things. It’s about ‘Life’  – joyful life, peace-filled life, the life where ultimate meaning and purpose are discovered through a relationship with God through Jesus Christ the one we were made for. And it reaches everything.That without Him, we’ll never know the life in all its fullness that we were designed to have. I’m into LIFE not religion!

A celebration, a loss and some soulful music

I was thinking today that this was an autumn I wasn’t expecting to see. This time last year, I really thought the leaves would be falling and I wouldn’t be here to see either them or even the entire summer we’ve just had. The different perspective on life and living that it brings is noticeable. Relationships have deepened and various friendship ties that might have become loose have been strengthened. Priorities to which I might have paid little more than lip service, have become more plain, even urgent. It feels like a fresh flowering of life.

In the middle of that flowering, we had wonderful news late Monday afternoon that following an interview, observed teaching and planning sessions, Catherine had been appointed as the permanent, full-time teacher in one of the Early Years Foundation Stage classes at the primary school in which she’s been working for the past year. It’s fifteen minutes drive from our new home. The joy was tangible as we stood hugging each other, both struggling with our emotions. It’s been an eight year journey for her to reach this point with no small number of knock backs – along with some encouragements – along the way. If Father’s timing is said to be perfect, here is another example. Just when I’ve stepped back from my regular paid employment and the need is there, so is God’s provision. Paul’s words to the Philippians show themselves true again as I read, “Do not be anxious about anything but in every situation, by prayer and petition, with thanksgiving, present your requests to God”. Those answers might not come as quickly as I want; some prayer might remain apparently unanswered as Jesus has something better for us. But He hears and he acts. And so we pray on, holding our lives and our broken world – including fleeing, desperate Syrians,Iraqis and others – before Christ.    

It was a privilege to travel down to Plymouth some weeks ago, to be in a studio for a live recording session as one of Ben’s best friends, Samuel Chapple, laid down a number of piano tracks for an album, among them his arrangement of Amazing Grace, arranged, played and recorded as a tribute to Ben. I’ve included a link to it at the bottom of this page. When we find ourselves in a broken place, it’s a truly beautiful piece of music and we’re so grateful to Sam for this way of expressing his love and affection for his friend.

But just as I prepared to write and post this entry, I’ve learned of the death of a friend who was one of my closest during my teenage years, through my twenties and beyond. Nigel was, until illness overtook him last year, an associate professor in Sydney lecturing and researching neuromuscular diseases. He and I were at kindergarten together, lived in the same street for many years, attending Christ’s College, cycling to school together, both playing in the school orchestra (he was a great flautist), shared employment both as scrubs cutters and gorse sprayers in Pigeon Bay near Christchurch and then on a road gang installing road signs in Essex in 1989/90. He was my Best Man as I married Catherine. As well as sharing a surname (his with an added ‘e’), we shared many fun and memorable times. I’m only sorry that in recent years, because of the distance and, more latterly my own health, I’ve not been able to see him as much as I would have liked, but we had been in as much email contact as we could both manage in this last year. We had shared the irony of the fact that we were both now facing serious life threatening conditions having shared so many other things in life together. Sadly, both his chemotherapy and immunotherapy treatment proved to be unsuccessful. I’ll miss him. The rather precious photo (click on it for a better view) shows him with Ben on his lap reading him a story at our home in Auckland in 1993. The bitter twist is that they’ve both left us in the same year. I’m filled with a fresh sense of sadness.

As I watch Sam play his rendition of Amazing Grace in tribute to Ben, I also think of Nigel. God’s amazing grace given through my constant companion, Jesus Christ, has given me so much for which to be thankful. It was grace that extended to both Ben and Nigel. They were a gift to me.

Sam has wonderfully included a short tribute/ascription to Ben at the end of the video. 

Light Piercing the Silence

My many weeks of silence since last I wrote have been for a number of reasons, but perhaps really only one. With the busyness of our house move eight weeks ago, taking my brother’s wedding in Kent and a holiday with our wider family from New Zealand and Australia, followed by clearing the Vicarage over these last few weeks and numerous associated trips to the charity shop warehouse and recycling centre, it’s been a non-stop season of change, with lots of joys and things to remember.

But perhaps the real reason is that it’s been painful to stop. For each time I do, the reality of Ben’s death sits on me. Its noise means that there is no easy sitting in quiet without it drowning out what silence I have, making times of quiet – even to pray – feel impossible. Even as I write now, I find my jaw clamping and my eyes welling, and something deep down inside me crying out with an extended, “No! no!…this cannot be!” On 27th July it was his and Dabi’s second wedding anniversary and eight days ago, it was 100 days since his death and I know it’s high time to write again. I know that in writing, it’ll help me continue to process and own what’s going on inside and prayer will come more easily, allowing a river of healing to start to flow more and more as I keep saying, “Father, I don’t get all that’s happened and don’t understand ‘why?’ …but I trust You’.

We’re all as a family adjusting and supporting each other as we go; keeping Ben’s name as common currency around the house has been vital as have been the tears and the occasional meltdowns. There are those particularly tough moments such as our visits to his grave when we see the small plaque in the ground reading “Benjamin Clark…Died 28th April 2015…At Rest…Aged 23”, and we feel more speechless than before. How helpless did I feel when Simeon arrived at the house two weeks ago having laid some flowers at the grave, and looked at me through tear-stained eyes and said, “Dad, don’t you go too – I couldn’t stand it”. All we could do was hold each other through our tears.   

It’s been such a gift to have so many friends around us – those who’ve helped us move, visited, those who’ve assembled furniture, stripped wallpaper and painted rooms for us, who’ve had us over for meals and prayed with us. Our family at Grace Church here in Exeter have been superb – to walk into the Sunday morning gatherings and hear from God’s unchanging Word and sing powerful hymns, many written hundreds of years ago and sung by the saints over the generations, expressing timeless, unchanging truths about our wonderful Saviour God. They’ve been a life line. So too have been times with the blokes from Grace Church in our community group as we meet regularly for breakfast to share and pray for each other. To have been able to cry with them has been releasing. It’s been a heartening reminder of what the body of Christ can do and be as it carries along one part of the body that’s hurting.        

Finally, after what was an inconclusive autopsy, we have had news from Ben’s neurologist as to the the likely cause of death. Having disseminated the histology results around the world, he asked us to meet him recently to tell us that the not-yet-proved, but likely cause of death is a new and rare virus known as Henipavirus. It is one which has, up until this point, only been found in north-eastern Australia, Malaysia, Madagascar and Ghana. It arises from the urine of a fruit bat infecting fruit which is then ingested, or can be picked up from horses which have been infected from the fruit bat. The fact that the incubation period is quite short indicates that because Ben hadn’t visited any of those places (with the exception of Malaysia many years ago), he most likely contracted it in Brazil, making him possibly the first case to be found there. Dr Harrower was clear with us that there is no known cure for it yet. Whilst it’s cold comfort to know this, we were strangely helped as it would have been harder to discover he’d died from something for which there was a cure. He also shared with us that, had he lived any longer, Ben would have deteriorated physically and become increasingly mentally impaired. Again we felt a sense of relief that he was spared this. But nonetheless, we process this information with a mixture of unreality and more than a few “Why?..Why Ben?…How?…?”

Next Friday, I have an appointment to register his death at the Civic Centre. The following day would have been his 24th birthday. We’re gathering with some family and friends for a picnic near Plymouth, his home for three years until 2013, to mark it. It was great to have been down in Plymouth two days ago in a recording studio as Ben’s oldest friend, Sam Chapple, recorded his own arrangement of Amazing Grace in tribute to Ben.    

In terms of my own health, just yesterday, I had the good news from my oncologist that after a CT scan two weeks ago, my tumour has further reduced in size – not as much as last time, but it’s going in the right direction. And we must remember that this is a cancer which up until recently was  considered rampant and virtually unstoppable. Whether it’s principally the ipilimumab or the 10,001 people around the world joined in prayer for me, I’ll not know this side of the grave. But I’m content to thank Father for His work through any and all methods. We’ve all collectively breathed a sigh of relief – the days leading up to my results always cause some anxiety. Josh has described the feeling well in a song he’s just written and recorded, entitled Diagnose…to listen to it, click here. But to help enhance the good flavour of the day, Josh also found out yesterday that he passed his A Levels. This, on top of some great Uni results for Tom (who had to sit a late exam in Cardiff this week because of one he missed on the day of Ben’s burial), means we can all feel a good measure of thankfulness. 

And so the journey continues for us all. Dabi remains at her parents home in Brazil slowly rebuilding, while we here in Exeter also watch our changed lives take shape in a new house that feels like home already. We’re very much loving living in St Thomas just a short walk from Exeter’s beautiful quayside and feel so grateful to so many, and ultimately Father God, for making it possible. We still pinch ourselves to think how it all came about. With the Vicarage now cleared and cleaned, all that remains to be done is to relocate a few plants from the Vicarage garden in September to go in our small – but bijou – new garden which is about to undergo a miniature ‘grand designs’ makeover.

As we walk into the future, I’m reminded from the scriptures of Jesus’ time in the wilderness, being tempted by Satan to turn his back on his Father and give up on His character and promises. Whilst I’m not necessarily being tempted with the same things, nonetheless there’s always the lure through all that’s happened, to listen to that other dark voice that says, “Give up. With all that you’ve been through, surely there’s nobody there to hear your prayers and help. It’s all wishful thinking”. But the eyes of faith see something else. They recognise the presence of Christ, the hand of God, working through and with our pain to bring us to a deeper experience of His goodness and amazing grace. The eyes of faith see that in the hour of Christ’s greatest agony on the cross when He cried out, “My God, My God, why have you forsaken me?” followed by the words on his dying breath, “It is finished” – that even then, when things seemed bleakest, darkest and out of control, God was doing His greatest work for us. I tell my soul in these moments that we live through, “Put your hope in God, for I will yet praise him, my Saviour and my God.” His past faithfulness gives me hope today. Like Christ in the wilderness, it’s a case of holding onto Father’s firm Word. It’s not a blind faith or a ‘religion’ – it’s a relationship and trust in Someone attested to by multiple eye witnesses who were prepared to put life and limb on the line because of what they’d seen and heard, carefully recorded (with now an almost embarrassing wealth of unchanged manuscript evidence to show the written record we have in scripture hasn’t been changed), and based on the fact of His resurrection from the dead. Because of the ultimate vindication that Jesus’ resurrection gave, it’s a blazing signpost saying here is One, unlike anyone else ever, that we should listen to above all others and build our lives around. And that, through thick and thin, He can be trusted. He’s my champion. My hero. Our champion, our hero.

Arohanui – big love – to you all.

A few practical matters….

For those who’d like our new address, please click here…it’ll generate an email you simply then need to send without adding further text (unless you want to!) On receipt of the email, I’ll reply with the details.

If you’re at St Mary’s, Upton, a Clark family contingent hope to be with you this Sunday evening! 

As well, if you’re reading this having linked into it through Ben’s Facebook page, and you want to keep up with this blog, as Ben’s page is about to be closed down, please subscribe directly to this blog by signing up in the box at the top right of this page.

Catherine: Grieving the loss of a son

The words Father God spoke as Jesus was being baptised were “This is my beloved son, with whom I am well pleased”.

I don’t for one minute think I am God or that my son was but the sentiments I feel at my son’s passing are the same as the God of the universe. His reason for uttering these words is different than mine but at the end of his life, having lived 23 years and 8 months, this is exactly what I feel.

“This is my beloved son”.

Ben was the child that made us parents but also made both sets of our parents Grandparents. He was my first experience of pregnancy, child birth, breast feeding and full responsibility for a life other than my own. I was newly arrived in a foreign land, far away from my family and Ben’s arrival united Jeremy and I as a new family unit providing cohesion, purpose and expectation. Here is the poem I wrote and shared at his celebration service, summing up all that made him who he was –

Seventeen hours labour,

the birth of my eldest son.

The first of five precious children,

the eldest brother to become.

Two parents lovingly nurtured,

Four grandparents behind.

The eldest of twelve cousins,

his position was defined.

His homes have been quite varied,

a totting up of nine.

Three have been down under

and six on a different time.

Aunts and Uncles in both time zones,

his love of travel did arise.

Six continents, ten countries,

a wife this did supply.

He started in New Zealand,

Five years upon it’s shores.

Then seventeen in Britain

until Brazil then had a cause.

He learnt to speak three languages,

English, Spanish, Portuguese.

He worked as a translator

using every one of these.

One heavenly Father,

Such love upon his face.

Ben’s baptism declaring,

He knew his final place.

We miss you here my Ben,

You’ve left us such a hole.

But we know to be with Jesus,

is our final goal.

“With whom I am well pleased”

Ben ran the race with his eyes set on his Father in heaven. He added so much to us as a family and I am proud of him in so many ways. He has left a huge hole but there is no way I would ask him to come back. He has tasted heaven, not as a place “good people” go but rather the place where God’s perfect love is. God won’t make you stay in his presence if you have not chosen to be there. Ben had made his choice very clearly as a young boy.

So how do I, do we move on as a family? I am so, so grateful Father warned me of Ben’s death. On April 12th, 16 days before he died, as I was worshipping in church through singing, I felt Father say to me, “Catherine, how do you feel if I take Ben?” My answer? “Oh Lord, I am not sure I am ready for that yet!” I then felt him explain to me that he had brought Ben home to die, that Dabi had not changed her name to Clark (it being very difficult for her with documentation and travelling to do so and in Brazil you only have one chance; at the legal marriage ceremony) as she would find it easier to rebuild her life with her native Brazilian maiden name and that we had Ben’s entry on the blog to remind us of more lucid days and that he knew where he was going.

I felt shock as I left and met up again with Jeremy but I started the process of accepting Father’s will. I had no idea of timing but we now know it would not be long. Ben was much more lucid in those final few days and we talked about death a lot. He was peaceful. We did not know it but we said goodbye on the evening of Monday April 27th reading Ben his blog entry. He did not remember writing it but as we said to him “so you know where you are going” he agreed and I left. I had no idea I had said “goodbye”.

It has been tough and still is. There is a huge gap, however I feel we celebrated his life in the most wonderful service on May 8th and the short service at his burial on the 12th allowed me to say goodbye. I carry on with the mundane in life, I feel happiness and deep sadness that almost overwhelms me but I know God the Father walks beside me and has bestowed huge blessings on me. Jeremy’s health seems less of a worry, we should move into our mortgage free house soon and I have amazing opportunities at school for the next academic year. I will never get to a point of saying “ah, all done now, no more grieving”. If I live to 90 I have 42 years on this earth when I will miss my first born son. That is huge, but I will turn my gaze toward heaven and use my feet to walk a step at a time to fulfill the life and calling Father has for me. I will feel joy but sometimes it will simply be an act of will.

Painful pathways

There is both so much to write and yet nothing to write. Tomorrow will be three weeks since Ben died. The days, in one sense, seem so normal, so brutally normal, and yet at times crushingly painful. I go about some of the usual activities, the everyday stuff of life – maybe it’s driving, shopping, putting the bins out – and every now and again, the fact of Ben’s death overwhelms me like a tidal wave and I have to turn my head and clamp my jaw. Other times, when I’m by myself, perhaps showering, and alone with my thoughts, I’ve found myself doubled up in agonised weeping.

Grief is such an intensely personal thing that it’s so often hard to know what to say when people ask how I am. How can it be described when I have this overpoweringly deep ache inside that’s beyond words? I hear the words ‘Ben’, ‘died’ and ‘dead’, and they can’t, they don’t, they shouldn’t belong together in one sentence. Losing a child is the one thing we don’t seem to be programmed for. I’ve not trodden this path before and I don’t have any map for it. The grief ‘process’ is not a tidy thing. The stages are messy and mixed – normality mixed with numbness, acceptance merged with denial, reality mixed with unreality; my mind seems constantly overtaken by this thing, this momentous thing that’s overtaken us. 

Over the years, I’ve given away many copies of Nicholas Wolterstorff’s extraordinary book, Lament for a Son. It’s his diary account of the year after the death of his own son, aged 25. I now find myself dipping into it with a greater intensity. Part way through he writes words that now grab me afresh – 

There’s a hole in the world now. In the place where he was, there’s now just nothing. A center, like no other, of memory and hope and knowledge and affection which once inhabited this earth is gone. Only a gap remains. A perspective on this world unique in this world which once moved about within this world has been rubbed out. Only a void is left. There’s nobody now who saw just what he saw, knows what he knew, remembers what he remembered, loves what he loved. A person, an irreplaceable person, is gone. Never again will anyone apprehend the world quite the way he did. Never again will anyone inhabit the world the way he did. Questions I have can never now get answers. The world is emptier. My son is gone. Only a hole remains, a void, a gap, never to be filled.

And yet for all this, paradoxically, I’ve still found the occasional quiet, still place. Where times of personal prayer seem difficult, sitting in silence seems to bring some measure of peace. Being held by Father. Aware of the effect of others praying for us. Occasionally as Catherine and I exchange a glance across the room, or quietly lie holding each other, heads on our pillows, we share a few words, even a simple prayer, or we simply look into each other’s eyes…and we know a strength. We’ve been buoyed by some wonderful friends who’ve dropped everything to be with us. Our old friend, Michael – Ben’s Godfather – coming from New Zealand for five days. Our dear friend Hélène, who took over the running of our home for some days to give us space to just ‘be’. So many good friends and family from far and wide who travelled to be at Ben’s Thanksgiving Service and since, to say nothing of the cards, letters and flowers that have arrived. The strengthening effect from all this has been tangible. (For those not able to be at the service, the Order of Service is included below) 

At Ben’s burial in Alphington, Exeter, last Tuesday – a quiet gathering with family and a couple of friends – I was conscious of a peace as I sung the Lord’s Prayer in Maori, holding Catherine’s hand and aware of Dabi, then aware of the tears of one of Ben’s brothers dropping to the ground in full flow as he held onto his mother. It was St Augustine who wrote 1600 years ago – 

“The tears…steamed down, and I let them flow as freely as they would, making of them a pillow for my heart. On them it rested” (Confessions IX, 12)

There is a peace being discovered. I know it’s Father quietening us with His love. 

Just two days after the burial, and the day we said goodbye to my parents as they returned to NZ, Catherine and I visited my oncologist to be told that the tumour on my lung has shrunk by one third, and other smaller lesions present in other places in my body remain unchanged. We couldn’t quite grasp it. That news came a day after an unexpected phone call from our insurer saying that my illness policy was being backdated twelve years to the time of my original (and apparently, back then, less serious) melanoma diagnosis in 2002 and was now going to pay out enough for us to be mortgage-free in our intended new home.

With both these pieces of good news, evidences of God’s goodness, my mind confronts me with the question, “If these, why not Ben also?” But my heart quietly mediates, not with an answer, but a response, “Remember what God said, ‘Behold I am making all things new’…there is the Day coming when it’ll all be alright, when it’ll all become clear”. It all serves to remind me that Father weaves the golden threads with the dark ones as He works all things together for good  and that God who in Christ suffered for us on the cross, and who took the sting out of death for those who love and trust Him, walks with us in all things.  

Ben’s Service of Thanksgiving…click to enlarge

My Tribute to Ben

Delivered at his Service of Thanksgiving, Friday 8th May

I still clearly remember the day in Timaru, back in our native New Zealand, the day Ben was born. On my way home from the hospital, where I’d earlier laid this not-so-small 9lb 7oz baby on my chest, I had to stop the car and weep as the enormity of it all swept over me. And now, here I am, weeping again, for my precious first born, for Ben.   

But it’s been an amazing life. And I want to invite you for a few moments to imagine you’re walking with me around a gallery – a gallery with pictures on the wall, an exhibition. But in this case, they’re pictures, snapshots from Ben’s life.

As we come into the main exhibition hall, there’s one taken when we lived in Auckland. He was about three years old, and on a swing I’d made out of an old tyre, with his small friend Christopher. 

“I’m on a rocket”, Ben is saying, “and I’m going to the moon, I’m flying fast”.

“No”, Christopher said, “you’re on a swing”.

Ben was always one with huge imagination and creativity – we’ve got paintings at home by him; he was a dreamer and visionary who saw and imagined things we don’t always see...you can see an example alongside here of a vision of eternity he tried to capture on paper some years ago (click on them to enlarge)

But then we move along the wall in the exhibition hall, and here’s a picture of Ben, Macbook on his lap, iPad next to him, iPhone alongside, the very same Ben who said to me in 2008 (with a twinkle in his eye) as I went off to buy a new laptop, “Dad, if you come back with anything except a Macbook, I’ll disown you”. It’s the same Ben who then had, as his first and only occupation after graduation, the job of a translator for a software firm in Brazil. He loved his technology, his gadgets. But also in the picture on the gallery wall, he’s showing someone else how to do something. Always there for others. But his techie passion did though get him into trouble at one point at his first secondary school, when he went a little further than he should have done, hacking into the school system, something that led gentle, ever kind Ben to be asked to leave. Everyone was shocked…! But Ben dealt with it, and we all learned to smile about it, and Ben then, before he was married (and with a real sense of repentance), sought to put it all right, I’m sure motivated by his love for Christ. 

But then, as we move out of the main exhibition hall, we move up the stairs into the World Room, the international room. And there on the wall is a picture of Ben, passport in one hand, globe in the other. For those who knew him well, you can’t have met anyone who suffered from ‘wanderlust’ more than him! Always wanting to be somewhere new. His globe at home has red sticky dots all over it for the places he’d been, or even just stopped over, memorable trips being his 24hr jaunts to France with friends from Plymouth: numbers of times back to New Zealand, twice unaccompanied; a long camping road trip with me and Tom to Portugal. Then short one or two day visits to Ireland, to Germany, and to Spain with university friends, and of course his beloved Brazil with three extended visits before settling there.   

But there, alongside that picture with the passport, is one with Ben holding a foreign phrase book. However, it seems he didn’t really need it too much. Maybe it all sprung from his unusual ability to speak backwards, (where he was able to completely reverse sentences he heard, letters included), but he discovered, as he was leaving school, a passion for languages. And maybe it was helped along by a certain young lady from Brazil he met on Twitter, but within a short time he was speaking Portuguese…and then Spanish. In fact, his love for languages turned him into a bit of a grammar-policeman at home, and saw him writing a letter to his grandfather in Latin. But the picture that’s right alongside side that one though is a wedding photo – there he is with beautiful Gabriela, the love of his life, his soul-mate, his precious Dabi, who in these last few weeks has always brought a broad smile to his face whenever she walked into his room at the Mardon Centre…Dabi, who’s now so badly hurting…and we just give you so much love, Dabi, for all the happiness and joy you brought him.

Then we come into the Memory Lane Room in the Gallery.  And there’s a picture of Ben aged five, holding the end of a hose pipe up to his mouth. It was a day in Christchurch in 1996. From inside my study, I heard this young but firm, clear voice outside in the garden. And looking out, I saw Ben, speaking into the hosepipe as if it were a microphone, other hand gesturing towards the trees above, “You birds, you better believe in Jesus. He loves you. You need to say sorry for the wrong things you’ve done and follow him.”

At the time I had a combination of reactions such as ‘poor preacher’s kid’ and ‘how funny’, but since then, watching him grow and observing the man he became, with such a heart for God and a heart for mission, I realise that God was at work in him even back then preparing him for communicating the message of the cross, not to birds, but into foreign places.

But this picture is joined to another picture alongside it, and that picture is of Ben only three years ago…I’m standing next to him at his church in Plymouth, with a bible alongside him, and his hands raised high above his head in worship, expressing that passion for God, for Christ… passionate and praying for others to come to know his Saviour… working out that call that God had placed on his life, even from those many years before – even in his relatively short life – that call to make Jesus known. Only last year he sent me a long email, describing a dream he’d had of him straddling a wide river, standing tall over it, helping others across to the other side, helping others to know Christ. And I sense he’s kind of doing it again today as we remember his life.

But then the final picture, an actual photograph taken on a home visit just eight weeks ago, surrounded by all but one of his siblings, with Catherine and me. Ben who was so loved, respected and looked up to by Simeon, by Tom, by Josh, by Lydia – Ben who loved us, who resigned his job, his life in Brazil, and with Dabi at his side, came back here to be with us because of my health, not knowing he was coming home to die, coming home before he went to his greater and most perfect home. At home with Jesus.

For us, it’s the most heartbreaking pain, but paradoxically also a deep peace. He’s there where he longed sometime to be. Safely there all because of Jesus who said, “I am the resurrection and the life. Those who believe in me, even though they die, will live. And everyone who lives and believes in me will never die.”

I’m so thankful to Father for the gift of Benjy – my son, my friend and my brother in Christ. 

The big decision and the Faithful Hand

Last week’s activity spike saw a fairly gentle and calm return to ‘normal’ within a couple of days. Ben remained on the High Dependency Ward back in the Royal Devon & Exeter Hospital for two days after his two strong seizures, but made such good progress that he was returned to the Mardon Neuro Rehab Centre by the middle of the week. He was so happy and grateful to get back to his room at Mardon as it’s feeling quite like home to him now. He’s felt incredibly tired since these recent seizures and spends a lot more time sleeping as his body is plainly catching up and healing. He choose not to come home for the day on Saturday, feeling too vulnerable and at risk of something happening. That feeling was confirmed as yesterday he had another bout of sickness which has both laid him out and left him feeling pretty weak. He loves having visitors, so if you know him and you’re able to get there, do try….visiting times are 4.30pm – 9.30pm daily.

My rashes and itchiness described last week, whilst possibly a side effect of the Ipilumumab’s interplay with my body, were considered more likely an allergic reaction to something. Driving into the hospital beforehand however, I was convinced in my mind it was the beginning of the end, but was reassured by the ward doctor that all seemed fine, and within 12hrs and with a dose of antihistamine, it had all cleared up. My sister Julia in Melbourne suggested that perhaps with my immune system living in such a heightened state, it meant that something I might have had a minor reaction to once, now manifests more severely. “Seemed sensible”, the rest of the family chimed in via WhatsApp, our ever-pinging group chat app on our smart phones. As my friend Dave kindly offered, “You just have to learn to be not such a drama queen!” It was good to have a laugh about it. However in the last few days, I’ve been feeling pretty ‘feak & weeble’ and over the weekend have developed signs of discomfort in my chest which have come and gone with the return of some fairly prolific night sweats again. Is this the sign of my tumour finally reacting to the drug and becoming inflamed, or something more? I just can’t hide from the feeling that things are moving along.  And that’s unsettled Catherine and family around us, which causes me some agony.  That, to be honest, is my ongoing source of pain in all this…seeing what it keeps causing in my darling ones. The crucial next CT scan takes place this Friday, but results aren’t returned until I meet with my oncologist two weeks later. Is it going to feel a long couple of weeks? Perhaps, but as I’ve often felt tangibly carried along as on eagles wings, so I’ve got a confidence that Father will continue to do so…and that for all of us.

But our big decision which was announced across my churches this last weekend is that, after some time considering the realities and possibilities, I will take early retirement on grounds of ill-health most probably effective at the end of April. It was done in consultation with my doctor and the Bishop of Exeter. It was partially my doctor’s unequivocal “absolutely!” that made it so clear, but also an increasing feeling that it would best serve the family’s needs as well as opening up new, but lighter ministry opportunities for me while or as I’m able. It does seem strange that at the age of 48 and after 20 years of stipendary ordained ministry to be doing this, but these are extraordinary circumstances. Plainly, it’s a decision which we’ve not taken lightly and I’m conscious of the pain of parting, leaving our village and church family in our parishes here, but it’s one about which ultimately we feel very peaceful. It’ll also allow for some clarity and planning for my colleague Mike (whose wife Rachel is facing not one but two major battles with cancers…read her blog here) and the diocese in considering a successor to help shoulder the heavy load currently being sustained since I’ve been on sick leave these last few months.

In the meantime, it presents us with the big issue of housing. As a large family, we’ve benefitted from some excellent church-owned vicarages over the last twenty years, but on retirement, all that goes. Whilst we do own a small 1.5 bedroom flat in the small Devon market town of Crediton, it’s tiny and only good for 2-3 or short stay accommodation. So, considering the future, we’ve started on the momentous task of house hunting, of doing our calculations and engaged in the breathtaking task of raising finances, trusting God as we seek to buy, for the first time, a family home that may or may not be a part of my own future.  Already we’ve received three particular signs which have encouraged us to believe that we’re doing the right thing. Firstly, a dear woman approached us at a large city-wide service one night and through our conversation, encouraged Catherine and I to realise afresh that God saw and could supply the need and that she might,after some prayer, be of some assistance. Then secondly, a couple of days after taking the retirement decision, we received not only a gift from my previous church and from friends, but also a note through the post from a member of a former congregation of mine, sending greetings and love, and being reminded herself of God’s faithfulness shown to her both directly and through her late husband, felt prompted by God to send a gift to us and was therefore enclosing a cheque. The gift was a generous ‘seed’ amount of money, tangibly now showing us that Father would help supply what was needed for a family home. Catherine and I stood facing each other with eyes welling as we read both it and the cheque. Amazed. Speechless. Thankful. It was the apostle Paul who wrote, “And my God will supply every need of yours according to his riches in glory in Christ Jesus” (Philippians 4:19)

Thirdly, we put our flat on the market a week ago last Saturday. Five days later, we had an offer – full asking price. Again, we saw Father’s hand.        

Understandably, Catherine is particularly keen that I’m a part of any purchase – that she can say I saw it, that I was there. So, still waiting to see how Father might supply what is lacking, yet proceeding sensing that we ought, we’ve viewed a few houses and, taking into account both the location of Catherine’s job in Crediton and Exeter College for Lydia next year, we’ve identified and viewed what we feel is the perfect one – a modest house, and one that has room enough for those who are still at home including Ben & Dabi, who’ll most likely need accommodation and support with us into the medium term and a downstairs bedroom should a time come when I need it.  

As I listened to an amazing man last week speak about he and his young family’s work, living and sharing Christ among Muslim fishing communities in South-East Asia, he said so often it’s only when we’re at our wits end, God meets us there. I smiled and nodded my head in recognition. It was good though to be encouraged to keep realising it. 

Struggles & Signs

For the last two days, Ben’s situation has been improving, inch by inch. He’s been opening his eyes, and yesterday, he was more engaged visually. If his eyes are open, most of the time he looks quite vacant until he momentarily latches on to something or someone…then he’s gone again. He has started to move his left hand around and even offer a faint grip, but yesterday, as the sedative was reduced, he became more agitated and tried to pull his feeding tube out. The sedation level was consequentially increased. Last evening however, the sedative was withdrawn and he seemed more naturally at peace, though he’s wearing the medical equivalent of a boxing glove to stop him pulling tubes out. Whilst he’s breathing unaided, the ventilator and tracheostomy remain. The nurses had him sitting (with much assistance) on the edge of the bed yesterday morning, and even reported that he had given a faint smile at something. But whilst he’s moving his left hand and leg freely about, there is some concern about the almost complete lack of movement on his right side. However on the positive side, a lumbar puncture yesterday has returned a clear result.

The great mystery, yet uncovered, is the cause of it all. The neurological and microbiological teams are continuing to work away, eliminating various possibilities and scanning him for others. We continue to await the results of genetic tests from Oxford and other places. A couple of possibilities that haven’t been discounted leave us somewhat cold. Dabi remains constantly at his bedside from 2pm – 8pm each day, and Catherine and I are there as much as possible also.

It seems so strange that it’s now Day 11 since the seizure that set it off. The outpouring of love and support has been immense from our own local church and community. To have one of my colleagues interrupt his holiday to go into the ICU and spend half an hour alone with a then-totally comatose Ben, to pray for him, was amazing. But there’s also been so much support from almost everywhere. On the spur of the moment, Tom and I went last Sunday to a church with which our family has a strong link. Walking into Grace Church, we were met by a wall of love and compassion from our many friends there, and were humbled to unexpectedly find that a section of the service had already been laid aside to pray for us as a family. To have a crowd stand to pray for our family was strengthening. After the events of this week, to sing hymns and songs, both old and new, focussing not on ‘me’ but on the unchanging nature of our wonderful God and the unassailable truths of His love, His grace, His forgiveness, of Christ’s cross and the eternal life offered to us, was heavenly. To have the scriptures opened and from them, Jesus lifted up and commended again, was just like a balm to my weary soul. Thanks Stuart, Rachel and Rob, Matt, Dave and everyone.

It was balm particularly because for some days, I’ve wrestled with “Why?….And How do I defend God to those many who might think, ‘If this is how God treats His family, I’m not interested in believing in Him’ ?”. Then I again considered how Job (pronounced like ‘Jobe’) and his friends in the Old Testament had tried to explain and defend God’s ways to each other in the face of Job’s tragic circumstances and had gotten it so badly wrong, and were even accused by God of darkening His counsel. Then I realised it wasn’t my job. I can’t see what He sees. I can’t understand all His purposes and ways. Father’s ways are higher. I’m reminded of Isaiah 55, where I read –

For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord.

And then in Deuteronomy 29, I read –

“The secret things belong to the Lord our God, but the things that are revealed belong to us and to our children forever, that we may do all the words of this law.

There are some things we will never understand while in this life – they are the reserve of God. On top of that, we live in broken and confused world that suffers from the effects of human sin at every level and the resultant, momentous fracture from its creator. We experience the result at various levels of our lives. My role though, as one of Christ’s friends and servants, isn’t to explain all God’s ways or why He allows some things to happen. My call is to live out now what we do know and understand from the scriptures, of God in Christ who has entered into our world and into our suffering. My call is ‘to give a reason for the hope that is within’ me, to give a good account, a defense of the gospel of Christ, to show that it makes sense to believe and follow, that it’s based on attested facts and events and that it isn’t some made-up fairy tale. The Holy Spirit does the rest.

And so this last Sunday, in the middle of what are ‘hard to understand’ things happening in our lives, it was so releasing to worship our God who is incomparable, and who has promised never to leave us, so close at hand in Jesus Christ – Jesus, whose body was broken for my broken life to make it whole through faith in Him, in His sacrifice and resurrection; Jesus, offering life in all its fullness, there helping and healing the brokenhearted, there in all His covenant love, grace and glory. It was sublime.

In the meantime, I prepare for my fourth and final scheduled immunotherapy session this Friday, unsure what lies ahead and beyond , but clear about Who walks with me. I ponder these words sent by a friend, a prayer of blessing –

May we discover that the road we didn’t choose, didn’t want to travel, is a highway that leads unerringly towards the Light.